Stop This Train

"Stop this train
I wanna get off and go home again
I can't take the speed it's movin in
I know I can't
But honestly won't someone stop this train"
John Mayer - Stop This Train

We are home. We came home yesterday afternoon for a night pass, so returned again today as an in-patient and received Oliver's next lot of chemo. We always knew that coming home would be tough, but we are really at a bit of a loss. I can't really think straight, everything is a bit overwhelming, and each moment is spent thinking of what the next thing to do for our little man is. When do we start his feed, which drugs do we need to give next, what does his cry mean, is he in pain, do we need to give him a laxative. From the outside it probably doesn't seem to be a terribly big chore. From where I stand, we bear a huge responsibility for the medical care and treatment of our son, ensuring he gets the necessary medications to fight his cancer and the side effects of the various drugs he is taking. In the hospital we knew when he was due something and had a pretty good idea of what was being brought into the room at what time. It's different when it's up to you.

Today has been a bit of a crazy day for us. We have each been a little bit loony, probably knowing full well that if we didn't laugh at each other we would break down in a tearful heap. It will come, just not yet. We are pretty much trying to busy ourselves so that we don't consider the reality of our situation. This is what the next 12 months is going to be like. In and out of the hospital for treatments, administering drugs at home, keeping track of Oliver's temperature and any other signs of sickness, being aware that at any time it could all go pear shaped and we could end up back in the hospital. It's a bit stressful.

On the positive side, Oliver has quickly fallen back in to his old behaviours. In hospital it was impossible to parent him as we normally would, because it would take less than 30 seconds before someone would come and see what was wrong and if Oliver needed some drug to settle him. Although last night was a bit unsettled (for me anyway, Karli and Oma seemed to sleep through it all) he has quickly started to settle himself and go to sleep without much fuss. Tonight should be a bit of a better performance I think.

Back to the lyric's at the top. Life is a bit crazy at the moment and still a little unreal. I feel like this just isn't happening and that I am going to wake up from a bad dream. Of course, it is real, this isn't a dream, and some day soon I will come to understand what it really means for my little boy to have cancer, and that there are negative and unwanted possibilities that are, quite frankly, frightening and not worthy of considering. I haven't quite come to terms with this train ride that we have become passengers on. There are plenty of others with us, and we will probably make some good friends, but none of us really knows our final destination, but we all want to get to the same place.